Cohorts - Letter to the IACFS/ME

[anne_likes_red]

Good on ya Shane. :Retro smile:

Good work!

 

[fresh_eyes]

OMG, Shane! Friedberg wrote back already! That's so awesome! Good on ya indeed.

 

[leelaplay]

I second how fantastic it is that not only did Dr Friedberg respond so quickly, but he had already distributed Shane's letter to the rest of the board. :victory:

Good on the IACFSME:Sign Good Job:

Now let's see if the CAA gets on board and acts in conjunction with the IACFSME to inform every XMRV researcher of the need for precise definitions of the ME/CFS cohorts.

 

[jspotila]

Now let's see if the CAA gets on board and acts in conjunction with the IACFSME to inform every XMRV researcher of the need for precise definitions of the ME/CFS cohorts.

We ARE on board and have been talking to anyone we can about the cohort definition question! And I think the Association would gladly partner with IACFS/ME or other groups working towards the same goal on this issue.

 

[Hysterical Woman]

I am looking forward to the IACFS/ME board's response and I am very pleased with Dr. Friedberg's quick response.

I am searching for some huge bright big flashing star to hang over Shane and Dr. Friedberg!!!!

Wow - thank you so much!!

 

[leelaplay]

We ARE on board and have been talking to anyone we can about the cohort definition question! And I think the Association would gladly partner with IACFS/ME or other groups working towards the same goal on this issue.

THat's great news Jennie! So good to hear that you're talking to people. And that you're willing to partner with the IACFSME and other groups. And while slightly off-topic, I'll repeat my thanks that Dr Vernon responded so quickly and clearly to the UK study.

Are you thinking of posting an open letter or position paper or something to that affect on the website regarding the need for clear cohort descriptions and guidelines as to what they should be, and having some sort of mail-out to all researchers?

 

[CBS]

Research and cohort guidelines - IACFS/ME, CAA and other advocacy groups

<snip>
Are you thinking of posting an open letter or position paper or something to that affect on the website regarding the need for clear cohort descriptions and guidelines as to what they should be, and having some sort of mail-out to all researchers?

Hi IF,

Jennie asked me a few days a ago where I thought the IACFS/ME might publish a set of research and cohort guidelines. I haven't mentioned this to the IACFS/ME (quite honestly, I thought they'd cross that bridge if they came to it) but one appropriate venue may be a position paper in a journal (the IACFS/ME would know which journal would be most appropriate). I would assume that doing so could be done relatively quickly, ideally within a few months (as for embargoes, etc. I don't know what a journal might require of a position paper). Let's hope that we'll have some more info soon. We all know how busy these folks are right now (and its reassuring to know that they are busy on our behalf).

Lastly, I'd like to thank Jennie for our talks (PMs) about this over the last few days. It would be great if this turned out to be an opportunity for the IACFS/ME and the CAA (and all other like minded groups in the US and abroad) to step up together in order to make a very strong and united stand.

Shane

 

[leelaplay]

That's all very good to hear Shane - thanks for letting us know.

Jennie, IMHO, has done magnificently at up-dating the CAA, and making me feel it is relevant and being an advocacy leader.

Obviously, I'm not a scientist. Publishing in a journal sounds wonderful. But I am concerned about the time lag. Research is going on now. In my opinion, a clear position needs to be made globally now. In ways that reach every researcher involved in XMRV and the public.

 

[CBS]

IF,

I agree, I would have liked like this out the day before yesterday (that really would have been nice). I am not familiar with how this will/should be handled to get it out (and get it right) ASAP. I really don't know how interested a journal would be if it has already been proposed as a standard by a group such as the IACFS/ME.

Shane

 

[leelaplay]

IF,

I agree, I would have liked like this out the day before yesterday (that really would have been nice). I am not familiar with how this will/should be handled to get it out (and get it right) ASAP. I really don't know how interested a journal would be if it has already been proposed as a standard by a group such as the IACFS/ME.

Shane

How about PLoS ONE? Anyone got $1350 and a business partner to recommend as the peer-reviewer? It could be out in 72 hours. :Retro winkArghhh - that black humour of mine :Retro redface: - couldn't resist)

Shane - You have done a masterful job of representing our interests to the IACFSME and the CAA, and so far their response time has been impressive. I will leave it in the hands of the professionals, trusting they know the effective way of doing this. And look forward to their responses to you.

 

[CBS]

How about PLoS ONE? Anyone got $1350 and a business partner to recommend as the peer-reviewer? It could be out in 72 hours. :Retro winkArghhh - that black humour of mine :Retro redface: - couldn't resist).

Now that was FUNNY! You just ended my day on the perfect note.

 

[anne]

How about PLoS ONE? Anyone got $1350 and a business partner to recommend as the peer-reviewer? It could be out in 72 hours..

I'm close personal friends with a gibbon. Will that do?

 

[CBS]

Response from Dr. Friedberg and the IACFS/ME on Cohorts

I received a very thorough and much quicker response than I had expected. With Dr. Friedberg's permission (and my sincere appreciation of his efforts and the IACFS/ME board's consideration) here is his response to my original letter:

January 12, 2010

Hi Shane,

We discussed your proposal at our monthly Board conference call today.

Here are the issues:

There are about 2,500 CFS peer review articles published since the mid-1980s. Classifications on the criteria you suggested (e.g., infectious onset, gradual vs. sudden onset) are reported in some papers but not in others. And the CFS definitions used vary from Holmes to Fukuda to Oxford to Reeves, etc. Review papers do attempt to group studies by various criteria (e.g., age at onset, symptom severity, etc.), but rarely do they identify commonalities that advance our understanding of subgroups, causation, outcomes, etc.

Bottom line: It is most unlikely that an over-arching classification of CFS studies will yield new information because(1) reporting is not consistent on any particular criterion; and (2) the conclusions of well-written review articles over the past 25 years have already identified to some extent what we do know about CFS.

Putting all such doubts aside, there is the question of who will undertake such an effort? This would involve a lot of volunteer time that qualified individuals do not have. These are usually full-time researchers who are in the business of getting grants for their projects. If they wish to write a review, they structure it according to their own views of what's important.

Now the good news: It was agreed that setting up study criteria for the type of data that should be collected in a standardized way in CFS studies would be a good idea and not an impossibly time consuming task. For instance, there is an effort underway to provide standard assessments for the Canadian criteria--a worthwhile effort as these criteria may better capture CFS than other definitions. This is something that will probably be addressed at our September, 2011 IACFS/ME international conference in Ottawa.

Thank you for your input.

Fred

Fred Friedberg, PhD
President
IACFS/ME
www.iacfsme.org

And my response:

Dear Dr. Friedberg,

I do understand the challenges of trying to catalog even a fraction of the articles that have been written over the past 30 years on CFS.

I am pleased to here of the ongoing efforts to provide a standardized assessment for the Canadian criteria. I do appreciate that it was primarily intended for clinical use. Having a research standard based upon the Canadian criteria is a significant step in the right direction.

And while I do wish that the IACFS/ME could address the task of setting up research criteria/guidelines before the 2011 IACFS/ME conference, I do appreciate that the members are all quite busy doing their own research (these are promising times) and getting this right is more important that getting it quickly.

Again, my sincere appreciation for your quick and thoughtful response and the IACFS/ME board/s consideration.

XXXXXXXXXX

So, any thoughts, suggestions, recommendations, etc.?

The IACFS/ME clearly feels that the Canadian criteria is amongst (if not the) the most useful diagnostic criteria (...may better capture CFS than other definitions.) and it is good news to hear that efforts are now underway to operationalize it for research purposes.

Shane

 

[Cort]

Its a great idea; the IACFS/ME should establish suggested guidelines for researchers to use to look at the possible cohorts present. The problem is that they move VERY slowly, if at all.

Really if you want to get something like this done - and I can't imagine Suzanne Vernon isn't thinking along these lines - talk to the CAA. They're starting the International Research Network which will have, among other things, established guidelines for sampling and testing. She is pushing them forward very quickly. . This is exactly what our research organization SHOULD be doing but the IACFS/ME has no money. At this point it really exists to put on the Conferences. Hopefully Dr. Friedberg will move them forward but they're almost all volunteer.

One problem is that most studies are so small - because of meager funding - that it would probably be statistically impossible to differentiate between the different cohorts. A larger study could, however, do this and it could be VERY illuminating to see how patients stack up. If study's differentiate between cohorts on anything its mood disorders - but why not infectious onset, etc? Its been done a few times; it showed a few differences at times and didn't other times.

 

[jspotila]

Really if you want to get something like this done - and I can't imagine Suzanne Vernon isn't thinking along these lines - talk to the CAA.

Suzanne already has the proposal from Shane. Bear with us (the Association) until another project reaches the stage where it can be publicly disclosed. I know that sounds cryptic, but as with all research-related projects, information can only be released after a certain point in the timeline. I will provide more info when I can.

 

[leelaplay]

Suzanne already has the proposal from CBS. Please bear with us (the Association) until another project reaches the stage where it can be publicly disclosed. I know that sounds cryptic, but as with all research-related projects, information can only be released after a certain point in the timeline. I will provide more info when I can.

Thanks so for letting us know that Dr Vernon has CBS' proposal. And that you are working on this aspect.

You're right. It sounds cryptic. And it sounds like you think it's leading to good news. I sure hope so.

And I hope the end result will be that all future me/cfs research uses the same, good definition - such as making the Canadian a research definition or the Empirical developed by the IACFS/ME. And also does so for any research referred to in their work.

if:Retro smile:

 

[gerwyn morris]

the cdc criterea have been shown to give about 66% false positives I think we need to repeat this fact incessantly

 

[leelaplay]

the cdc criterea have been shown to give about 66% false positives I think we need to repeat this fact incessantly

Hi gerwyn - don't think I've officially said welcome - so welcome! Have been enjoying your posts and perspectives.

I think this is a great stat that we should all know by heart and, as you say, repeat incessantly. I think we need the supporting research for it as well. Would you be able to post it along with its link?

if

 

[CBS]

CDC criteria - 38% actually have Major Depression

the cdc criterea have been shown to give about 66% false positives I think we need to repeat this fact incessantly

Hi, I know I'm supposed to be resting. Just had to drop a quick note on this. I haven't heard the 66% figure before but I am aware of the following:

Estimates are that using the CDC Empirical criteria leads to a patient population with as many as 38% of the patients suffering from Major Depressive Disorder, not CFS. Jason, Leonard A; et al. (2009). "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition". Journal of Disability Policy Studies 20: 93100.

The reference with the 38% Major Depression seems pretty solid (and often repeated - Jason runs the Center for Community Research at DePaul - http://las.depaul.edu/ccr/About/index.asp - they do a ton of good work on CFS).

This it for the next several days - feeling a bit better but still have a ways to go (feels tenuous). And thanks to all those that left the wonderfully supportive messages in the community lounge (yep, I peaked).

:Retro smile:

 

[Advocate]

Hi,

Estimates are that using the CDC Empirical criteria leads to a patient population with as many as 38% of the patients suffering from Major Depressive Disorder, not CFS. Jason, Leonard A; et al. (2009). "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition". Journal of Disability Policy Studies 20: 93–100.

This it for the next several days - feeling a bit better but still have a ways to go (feels tenuous). And thanks to all those that left the wonderfully supportive messages in the community lounge (yep, I peaked).

:Retro smile:

So, Shane, would it be fair to say, based on Jason's work, that the CDC Empirical criteria give a 62% false positive rate? (Sorry for bothering you Shane, when you should be resting.)

Gerwyn, were you thinking of Jason or something else when you mentioned 66% false positives?